BEHIND THESE HANDS: A Review and Giveaway

I am blessed with amazing writer friends whose stories inspire my writing. This week I am pleased to share BEHIND THESE HANDS by my writing buddy, Linda Phillips. Some of you may remember the cover reveal and when I blogged about Linda's unique path to publication for this book, which is her second novel in verse. Now you can glimpse inside this beautifully written upper-middle grade/young adult novel. 

But first, an update from Linda:

"Since the publication of BEHIND THESE HANDS in 2018, I have had the opportunity to share the keynote address at the National BDSRA (Batton Disease Support and Research Association) along with Laura King Edwards, whose younger sister, Taylor, partly inspired this story. Sadly, both Taylor and the other inspiring student whom I taught, Brandon Hawkins, have succumbed to this dreadful disease. Their legacy lives on through the work of the foundation, Taylor's Tale, and other foundations supported by BDSRA. Many thanks to my publisher, Light Messages, for keeping the fire going through this opportunity for my ebook to be selected as a Kindle Monthly deal through the month of June.  I hope you enjoy the read, and I always love hearing your feedback:  https://www.lindavigenphillips.com/contact/"

REVIEW

Fourteen-year-old music prodigy, Claire Fairchild, is headed toward a music competition. Her only worry is if she takes first place over her best friend Juan--who is actually proving to be more than "just a friend." The book opens with Claire's piano practice interrupted by her younger brother Davy who is visually impaired and recently diagnosed with a learning disorder. He smiles a lot and Claire thinks, 

It bothers me that he smiles so much, 

maybe because it doesn't seem normal; 

maybe because I know for sure  

if I were in his shoes 

my smile would be the first to go.  (p.6)

This is her first attempt to write down the music she has composed for the competition:

"The Kite" takes off 

in the dead silent stillness 

of this tiny room 

as if the breezes were driving  

through these walls, 

and I chase it with the melody 

that has gelled in my brain 

these weeks of practice, 

experimentation, 

frustration, 

doubts, 

and now 

certainty 

and  

exhilaration. 

I slide on the bench  

to the little table, 

and begin the task of setting down the notes 

that are strung across my brain, 

ready to pluck down 

like washing on a clothesline. (p. 15)

Into the middle of her preparation she is constantly interrupted by her parents' worries about Davy, his medical tests, her need to watch both brothers while her parents work, and her own self-doubts, comes devastating news: 

The suspense is over. 

Our house feels like 

those pictures you see 

after a tornado levels        

              everything 

but the victims are alive, 

shuffling around the debris 

in a daze. 

It's called Batten disease. 
.....
and  

it's going to get worse.  (pp. 31-32)

In heart-wrenching verse Linda leaves nothing to the imagination as Claire and her family reel from the news that truly does get worse: Davy will die from the disease, Claire is unable to concentrate on practice, she wants to give up music altogether because it feels meaningless, she is pummeled with guilt, her father won't talk about the diagnosis within the family, everyone acts like their family is normal when it is anything but, her mother is coming unraveled from lack of sleep and worry, and a cooling off with Juan that she can't explain--these are all more than Claire can bear.

Batten has rearranged our family 

like pieces of familiar furniture 

placed awkwardly in a new setting. (p.72)

When genetic testing reveals that her other brother, Trent, also has Batten, Claire finds out devastating news about herself:

What does that mean          

what she just said?                        

                      Carrier? 

What does that mean? 

I put my head in my hands 

seriously feeling faint now, 

nauseous, 

miles away as if I had just stepped          

                    out

of my own body. (pp 96-97)

Into the middle of this devastation steps Claire's best friend, Mia, who drags her along on a journalism assignment. Together, they befriend  Mrs. Shepherd, an elderly woman who shares her past sorrows as well as her wish that she had celebrated life more. This, along with attending the Batten Disease conference with her father, gives Claire the tools and drive to regain purpose and a plan to combat "the beast." 

I know I'll find a way to help my brothers. 

I know that wasting my time feeling sorry for myself                 

                       needs to be a feather      

                       not a rock.

I know that celebrating life needs to be a rock      

                       not a feather.

I know it might not be a bad day after all      

                       if I keep this up. (p.199)

BEHIND THESE HANDS doesn't cut corners or pretend something is pretty when it isn't. Batten Disease cuts short the life of young people and leaves families devastated by pain and loss. But it is the story of a brave young woman who faces it head-on and learns to celebrate the life of her two young brothers. In the end, she, Juan, and Mia meet with her parents to plan a fundraiser for Batten research. Other friends come to the house singing one of Mrs. Shepherd's favorite songs, "This Land is Your Land."

We all join in. 

Out of the corner of my eye 

I see Davy and Trent sitting at the top 

of the stairs, 

smiling and clapping. 

Mom brings them down and we finish the song.

"Are we having a party?" 

Davy says.

"Yeah," Trent says, rubbing his eyes, 

"How come you didn't invite us?"

All eyes fall on me.  

"This is just a preview, guys, 

the first of many

          and you will be invited

       to every single one of them.

I promise." (p. 288-9)

***********

GIVEAWAY

 

This book belongs in the classroom and will help readers gain empathy for those facing severe medical difficulties.  As Linda demonstrates in two scenes where bullies tease her brothers; it is often easy to pick on those who are weak. If you are a librarian or teacher let me know in the comments; I'll put your name in twice. I will pick a winner on June 7 and Linda will autograph a copy of the book. Please, U.S. addresses only.  

Make sure you check out Greg Pattridge's wonderful ALWAYS IN THE MIDDLE blog with other middle grade recommendations.

Rare Disease Day and SIX Giveaways!

Like me, you might never have heard of Rare Disease Day. The following three authors have intimate acquaintance with rare diseases. Giveaway details below.

Linda Phillips 

Linda Phillips Skyping with a class in International School of Nanshan Shenzhen, P.R. China (Hong Kong)

Linda is no stranger to my blog. Here is her story:

My involvement with rare disease began during my teaching career when I met two students at two different schools with Batten disease.  While I never taught either of them directly, the schools were small enough for faculty to know many students outside their classroom. I watched with concern as 8-year-old Brandon Hawkins' cognitive and motor skills began to decline instead of thrive as they typically might at a school designed to address learning differences. Concern heightened when his vision began to fail and after extensive testing, his parents shared the diagnosis none of us had heard before: Batten, a rare neurodegenerative disease that has no cure and is often fatal by the early twenties. Not far away at another specialized school, Taylor King, the same age as Brandon, was diagnosed by the same doctor with a form of the same disease.  Brandon moved out of the area, but the crowning blow came when we learned that his younger brother, Jeremy, received the same diagnosis, a phenomenon that's not uncommon when both parents are carrying the defective gene.  

My first book, Crazy, is an autobiographical account of my coming to terms with a mother with bipolar disorder. Watching the unfolding tragedies of the Hawkins brothers and Taylor evoked emotional issues similar to those I had experienced growing up with mental illness in my family. I wanted to explore how a gifted and highly motivated teen would deal with her brothers' physical debilitation and probable early death.  In both Crazy and Behind These Hands, the teen protagonist has no control over the devastation happening before her eyes.  She must find a way to accept a new reality and to react with compassion and love.  I didn't realize how closely related the two books are until I began making presentations through Skype in the Classroom.  My topic is "Compassion:  The Key to Understanding Mental and Physical Disabilities." I'm finding it extremely fulfilling to advocate for compassion towards those with mental illness and rare physical disabilities with teenage classrooms all around the world. 

You can find Linda online at: Skype in the Classroom:  https://education.skype.com/u/1216c5b4-63a7-4f75-6e57-08d777fe2482

Web:  www.lindavigenphillips.com

Twitter:  https://twitter.com/LVigenPhillips

Instagram:  https://www.instagram.com/lindavigenphillips/

Laura King Edwards

Laura and Taylor

I featured Laura and her book on my blog also. Here is more of her story:

Each year on the last day of February, Rare Disease Day raises awareness of rare diseases and their impact on 400 million people worldwide. It's a day to celebrate not only progress toward treatments and improved quality of life, but also what's special about each of those patients and the people who love them. People battle rare diseases year-round (and not just on a single day set aside to recognize them).  

I lost my little sister to a rare disease called Batten disease in 2018, so Rare Disease Day hits especially close to home. Since the devastating and shocking diagnosis in 2006, I've worked hard to save first her life and, later, the lives of other children like her. Taylor had a special kind of courage. She inspired everyone who knew her (and many strangers) in her too-short 20 years on Earth. Watching her overcome incredible obstacles to learn braille, run 5Ks and more pushed me to be the best version of myself, and it pushed me to fight for change. In 2013, I ran a half marathon blindfolded to bring attention to the cause. The race achieved that goal but also saved my life at a time when I wasn't sure I had the will to keep going. 

Run to the Light is the story behind the race, but more than that, it's about how to find hope and meaning in the face of life's biggest challenges. It's Taylor's story, but it's also a universal tale of courage and faith. My sister showed others how to dig deep and persevere, no matter what they were facing. On Rare Disease Day and every day, I hope Run to the Light does the same.  For more information please go to Taylors Tale. 

You can connect with Laura on Twitter.com/lkedwards11, instagram.com/laurakingedwards, or Facebook.com/laurakingedwards.

Kathleen Burkinshaw

You may have already met Kathleen on my blog. Here is her story:

Nineteen years ago, instead of enjoying a candlelit dinner with my husband to celebrate Valentine’s day we sat in a dimly lit room by the low lights of an ultrasound in the ER. The ultrasound revealed that I had a deep vein thrombosis (DVT). What started out as a routine three- day hospital stay to treat the blood clot turned into over a month in the hospital from complications that nearly killed me. My souvenir from my stay- a diagnosis of ReflexSympathetic Dystrophy (RSD) (also known as Complex Regional Pain Syndrome (CRPS)) as a result of nerve damage from the blood clots. Definitely would’ve preferred one of those ‘All I got was just the lousy t-shirt souvenir’ instead! 😊

RSD is a chronic, progressive pain syndrome caused by damage/malfunction of the peripheral/ sympathetic nervous system as well as the immune system. (Which is why doctors have said that my mother's exposure to radiation from the atomic bomb on August 6th has played a role in my RSD). Over the years RSD pain crept in taking over my legs and hands. Although, it has taken a lot from me, I’m not ready to give up everything. It did give me time with my mom when she opened up and shared the horrific memories and awful loss she dealt with on August 6th. And I learned that even though I couldn't be the active mom to my 4-year-old daughter(at the time) as I had been or continue in my past career as an executive in the health care field; I found my own ways to be a dedicated/involved mom and realized my brain could still work/be creative through writing. I'm so grateful for the support and love from my family, friends, doctors, and now readers of The Last Cherry Blossom. Their past and continued encouragement, along with my faith keeps me from giving up emotionally or physically.

Connect with Kathleen on Twitter @klburkinshaw1,  Instagram @kathleenburkinshaw,  Facebook @authorkathleenburkinshaw, and her  website www.kathleenburkinshaw.com. 

GIVEAWAYS

Each author is giving away TWO copies of her book. To enter this super-giveaway, please comment with your email address including your email address if you are new to my blog. Books will be drawn randomly and will be personally autographed to the winners by the author. Enter soon! Giveaway ends on February 29.  

Run to the Light: A Review and Giveaway

Congratulations to Deborah Allmand for winning THE PLAYER KING from last week's blog post.

********

My blog readers know that I generally read and review books for children and teens. Every once in awhile I come across a book for adults that I want to share with you. Run to the Light (Bedazzled Ink, 2018) by Laura King Edwards is one of those. 

But first a disclaimer: Laura Kings Edwards' book about her sister Taylor's battle against Batten Disease is not an easy book to read. Batten, a rare inherited neurological condition that causes vision loss, progressive cognitive and motor decline, and seizures, usually strikes children between the ages of 5-10 and is always fatal. Laura does not hold back on describing her fear, anger, depression, and anguish during the twelve years that Taylor bravely fought the Batten monster. But she also eloquently shares the joy she experienced in the moments she shared with her brave little sister. 

If you've been reading my blog long enough, you will recognize this story. Laura gave me the privilege of hosting her cover reveal on my blog last March. Now, you'll hear about the story. Read it, and be inspired.

Read the story behind this cover here.

THE REVIEW

In 2006 Taylor was not quite eight when her family realized that her vision and school problems signified something far worse than any of them imagined--they were Taylor's first symptoms of Batten Disease. In evocative detail, Laura shows the reader the disease's progression, how it impacted Taylor and her family, Laura's journey to find acceptance, and most of all--how Taylor became a symbol of courage to her Charlotte, NC community and to the Batten world at large. 

Throughout the progression of the disease Taylor never asked, "Why me?" "Even as her body started failing her, she sought a normal life and never asked for extra help or attention." (p. 26) Taylor's resilience amazed Laura more than anything else.

Although there were the common stages of denial and numbness that we all experience when we receive shocking news, the King family--particularly Laura and her mother Sharon, turned their anger towards fighting the disease. Several months after the diagnosis, Sharon invited a small group of women to come for lunch. Laura listened as Sharon "declared war on Batten disease and urged the rest of us to join her on the battlefield."

"The doctors said there's nothing we can do," she said. "But I'm not going down without a fight." Her voice cracked as she described our opponent, ticking off the symptoms that had crept into my sister's life and the awful ones yet to come. But her resolved never wavered. "Nothing about this will be easy. There's little being done for Batten disease. There aren't many kids like Taylor. But we have to start somewhere. Someone has to take a stand." 
.......
In that moment, Taylor's Tale was born. (p. 29)

Taylor's family enjoying
The Magic Kingdom post- diagnosis. 2006

Sharon's decision to fight Batten led to taking Taylor cross-country to participate in a clinical trail to receive purified neural stem cells at Oregon Health and Science University in Portland. It led to raising thousands of dollars for research, attending umpteen Batten disease conferences, and learning the foreign language of medicine and science. It even led to a new North Carolina law that established the first rare disease advisory council in the country.

At the same time, Laura joined the battle by educating others by blogging, attending conferences, meeting leading scientists in the field, and working hard to raise money for research. Laura's personal journey intermingles with her running career which became a metaphor for her own fight. She was afraid to give up, thinking that Batten would win. "All my life I'd been running; I wasn't about to lose this race." (p. 54)

Two years later Taylor inspired Laura by running a 5K-- the only blind person in the race. Taylor ran tethered to her running buddy by a bungee cord.

Whereas I'd often felt only anger toward Batten disease, my sister had beaten her demons by ignoring them--by focusing not on what she'd lost, but on what she could still do. She didn't waste her time worrying about what Batten disease had taken from her. She paid it no mind, and she ran her race. 

Before the trees bloomed in the spring, I'd started running for her. ( 101)

Although Laura began running for something greater than herself, the specter of not crafting the perfect blog post or not answering an email to Taylor's Tale on time haunted her. Would she hurt her sister's chance of survival? As she moved from being a sprinter into a long-distance runner, Laura realized,

I'd come to understand the value of a long-term plan. I'd learned how to push my body past the limits of what I'd previously believed it could achieve. 

And yet, my sister's body was failing her. (p. 129)

Taylor and her dad on a family trip to
the U.S. Virgin Islands, 2010.

It took me a long time to learn that Batten disease is more like a marathon [than a sprint]. You start off strong, with lots of energy. You have runner's highs and lows. Some days you think you could run forever. But then some days you feel like when you cross the finish line, you'll be so glad to see it--so exhausted--you'll just be happy it's over. Some families, families whose kids have died, have told me in the end that it's like that. It's so bad, so freaking ugly, they can't face it anymore. It isn't even about making happy memories at that point. it's about their kid's dignity and their own survival, and about finding peace. (p.209)

Taylor's Fletcher School classmates raised $3500 for Taylor's Tale in 2013.
Taylor is third from the right.

The last race that Laura describes in the book is the one she ran blind--just like Taylor did. She trained for five months and used the same bungee cord that Taylor had used several years prior. She was cheered on by other runners, the media, and her family.

I'd run 13.1 miles in the dark But I didn't take a single step alone. As I ran the final stretch of Thunder Road, led by the voice of a friend and the courage of a dying girl, I understood: Batten disease may have cast a dark shadow on our world, but I wasn't running away any longer. 

I was running to the light. 

I believed.

And I felt free. (p. 225)

Taylor in 2016

WANT TO KNOW MORE?

"Together with other dedicated advocates, Taylor’s Tale is uniting elected officials, healthcare providers, public health officials, researchers, biotech industry representatives and patient advocates. This important work is creating real, lasting progress in the development of breakthrough treatments and life-changing legislation for rare disease patients."

Also, Linda Phillips most recent YA novel in verse, Behind These Hands, is a story of a young girl struggling with the fact that her two siblings are diagnosed with Batten. It is based loosely on a family in Charlotte. 

GIVEAWAY

This giveaway began in March with Laura's cover reveal. Add your name to that list by January 3 and you'll be in the drawing also. This time you have an extra chance to win since both Laura and I are giving away a copy. Please leave me your email address if you are new to my blog.

Behind These Hands: A Review and ARC Giveaway

Congratulations to the following readers who won books:

Linda Townsend won Strange, Unusual, Gross & Cool Animals by Charles Ghinga

Kathleen Burkinshaw won Smack Dab in the Middle of Maybe by Jo Hackl

Jane Leah B. won Nature's Friend by Lindsey McDivitt 

Mary Housel won The Extraordinary Ordinary Moth by Darlin Gray

Thanks to all of you who entered these giveaways. Don't give up! I have lots more books to give away.

*********

I am blessed with amazing writer friends whose stories inspire my writing. This week I am pleased to share BEHIND THESE HANDS by my writing buddy, Linda Phillips. Some of you may remember the cover reveal and when I blogged about Linda's unique path to publication for this book, which is her second novel in verse. Now you can glimpse inside this beautifully written young adult novel that came out last week. I must note that it was hard selecting which poems to share. There are many more that are poignant, eloquent, and carry the story forward. 

REVIEW

Fourteen-year-old music prodigy, Claire Fairchild, is headed towards a music competition. Her only worry is if she takes first place over her best friend Juan--who is actually proving to be more than "just a friend." The book opens with Claire's piano practice interrupted by her younger brother Davy who is visually impaired and recently diagnosed with a learning disorder. He smiles a lot and Claire thinks, 

It bothers me that he smiles so much, 

maybe because it doesn't seem normal; 

maybe because I know for sure  

if I were in his shoes 

my smile would be the first to go.  (p.6)

This is her first attempt to write down the music she has composed for the competition:

"The Kite" takes off 

in the dead silent stillness 

of this tiny room 

as if the breezes were driving  

through these walls, 

and I chase it with the melody 

that has gelled in my brain 

these weeks of practice, 

experimentation, 

frustration, 

doubts, 

and now 

certainty 

and  

exhilaration. 

I slide on the bench  

to the little table, 

and begin the task of setting down the notes 

that are strung across my brain, 

ready to pluck down 

like washing on a clothesline. (p. 15)

Into the middle of her preparation that is constantly interrupted by her parents worries about Davy, his medical tests, her need to watch both brothers while her parents work, and her own self-doubts, comes devastating news: 

The suspense is over. 

Our house feels like 

those pictures you see 

after a tornado levels        

              everything 

but the victims are alive, 

shuffling around the debris 

in a daze. 

It's called Batten disease. 
.....
and  

it's going to get worse.  (pp. 31-32)

In heart-wrenching verse Linda leaves nothing to the imagination as Claire and her family reel from the news that truly does get worse: Davy will die from the disease, Claire is unable to concentrate on practice, she wants to give up music all together because it feels meaningless, she is pummeled with guilt, her father won't talk about the diagnosis within the family, everyone acts like their family is normal when it is anything but, her mother is coming unraveled from lack of sleep and worry, and a cooling off with Juan that she can't explain--these are all more than Claire can bear.

Batten has rearranged our family 

like pieces of familiar furniture 

placed awkwardly in a new setting. (p.72)

When genetic testing reveals that her other brother, Trent, also has Batten, Claire finds out devastating news about herself:

What does that mean          

what she just said?                        

                      Carrier? 

What does that mean? 

I put my head in my hands 

seriously feeling faint now, 

nauseous, 

miles away as if I had just stepped          

                    out

of my own body. (pp 96-97)

Into the middle of this devastation steps Claire's best friend, Mia, who drags her along on a journalism assignment. Together, they befriend  Mrs. Shepherd, an elderly woman who shares her past sorrows as well as her wish that she had celebrated life more. This, along with attending the Batten Disease conference with her father, gives Claire the tools and drive to regain purpose and a plan to combat "the beast." 

I know I'll find a way to help my brothers. 

I know that wasting my time feeling sorry for myself                 

                       needs to be a feather      

                       not a rock.

I know that celebrating life needs to be a rock      

                       not a feather.

I know it might not be a bad day after all      

                       if I keep this up. (p.199)

BEHIND THESE HANDS doesn't cut corners or pretend something is pretty when it isn't. Batten Disease cuts short the life of young people and leaves families devastated by pain and loss. But it is the story of a brave young woman who faces it head on and learns to celebrate the life of her two young brothers. In the end, she, Juan, and Mia meet with her parents to plan a fund raiser for Batten research. Other friends come to the house singing one of Mrs. Shepherd's favorite songs, "This Land is Your Land."

We all join in. 

Out of the corner of my eye 

I see Davy and Trent sitting at the top 

of the stairs, 

smiling and clapping. 

Mom brings them down and we finish the song.

"Are we having a party?" 

Davy says.

"Yeah," Trent says, rubbing his eyes, 

"How come you didn't invite us?"

All eyes fall on me.  

"This is just a preview, guys, 

the first of many

          and you will be invited

       to every single one of them.

I promise." (p. 288-9)

***********

GIVEAWAY 

This book belongs in the classroom to help young adult readers gain empathy for those facing severe medical difficulties.  As Linda demonstrates in two scenes where bullies tease her brothers; it is often easy to pick on those who are weak. 

I am giving away my autographed ARC to one fortunate reader. Leave me a comment by Thursday, July 26 to enter. PLEASE leave me your email address if you don't think I have it. If you start following my blog or share this on social media, I'll enter your name twice--but let me know what you do!

Linda on her way out the door
with her two verse novels-
on her way to ALA!

    

Run to the Light by Laura King Edwards: Cover Reveal and Giveaway

Congratulations to Donna Earnhardt who won a copy of OOPHAR THE BLUE from last week's blog.

Run to the Light 

“I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. Somewhere along the way, my life before Batten disease dropped out of sight in the rear-view mirror. I cried less and less. Mostly, I stayed angry. I’m still angry, which is good in a way, because it makes me want to fight like hell. Sadness doesn’t get me anywhere. Lately, I’m feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide. Mostly, it’s working. I cry very little, but when I do—it’s epic.”

Laura King Edwards
2017

SYNOPSIS

After graduating from college, Laura King Edwards has it all: a great job in marketing, a loving family, a new husband, and a house in her hometown of Charlotte, where she can watch her seven-year- old sister Taylor grow up. But one month after her wedding, Edwards and her family receive shocking news: Taylor has Batten disease. A rare, fatal, genetic disease that will cause Taylor to go blind, suffer seizures, and lose the ability to walk and talk. There is no cure. Edwards thought she’d get to watch her baby sister grow up, but instead she’ll get to watch her die.

Unwilling to take “there is no cure” for an answer, Edwards founds a charity with family and friends, Taylor’s Tale, to save children with the disease. Meanwhile, Taylor starts running with Girls on the Run, completing her first 5K race blind with the help of a sighted guide. Inspired, Edwards, a lifelong runner, begins running in half marathons to raise money and awareness. And to run away from the pain. 

Taylor’s Tale becomes the world leader in the fight against Taylor’s form of Batten disease, but the charity can’t work quickly enough to save Taylor. Stripped of her faith, Edwards falls into a dark despair. But Taylor’s unwavering courage in the face of certain death gives Edwards a renewed sense of purpose to turn her family’s tragedy into an opportunity—to ensure others won’t have to suffer, as her sister has suffered.  

Run to the Light is Edwards’s inspiring account of how she found the courage to face indescribable loss, and of what it means to really believe. 

INTERVIEW

Can you please share a little about Taylor and your journey?

I was 16 when Taylor was born. I already had an 11-year-old brother and didn’t want anything to do with a baby sister. But the moment I met Taylor, I fell in love. 

2006

My sister was beautiful, energetic, smart and healthy — perfect in every way. When I was in college, I used to come home from Chapel Hill on the weekends to spend time with her. But when she was about 7, she started losing her vision and struggling in school. When Taylor was diagnosed with infantile Batten disease my world was shattered. But for the next decade-plus, Taylor’s resiliency inspired me to fight like a bulldog to save her life and those of others like her. 

2007

2016

Tell us about your memoir, Run to the Light. 

I wrote hundreds of short stories before I studied fiction writing in college, but I never planned to write a memoir. In 2006, I was a recent graduate working on a young adult novel when Taylor was diagnosed with Batten disease. My once-healthy sister lost her vision, and her ability to walk, talk, and swallow food. She suffers from seizures and will lose her life at a young age. Yet Taylor always showed the rest of us how to be brave.

Not long after the diagnosis, Taylor’s Tale become the world’s leading charity in the fight against infantile Batten disease, championing historic legislation and groundbreaking, potentially lifesaving research. Despite our success, I’ve struggled at times to accept the fact that I still have to watch my little sister die. 

I wrote Run to the Light after going through a particularly rough time. In 2013, as Taylor fell deeper into the rabbit hole, I lost my will to move forward or my ability to believe in anything good. Then one day, I realized that to survive, I had to learn to “see” the world like Taylor, who never faced her illness with anything less than courage. 

For five months, I trained to become a “blind” runner. That fall, I returned to the same course where my sister ran her first race and completed the half marathon – blindfolded. 

Run to the Light isn’t about Batten disease. It isn’t even about running. Instead, Run to the Light is about how to believe, even if “believe” doesn’t mean what you once thought. It’s about turning a loss into a legacy. 

I wrote this book as a love letter to my little sister and to raise awareness of Batten disease. But I hope it also serves as a testament to the strength of the human spirit. I hope it helps readers find the courage to face whatever they’re fighting in their own lives.

How did running blindfolded help you write the book? 

Before I ran blindfolded, I was at such a low point that I wasn’t just worried about my sister’s survival — I was also worried about my own. It was difficult to wake up each day and find joy or even interest in anything when I knew my once vibrant, healthy sister was dying. 

When I ran “blind,” I had to rely much more on all of my other senses — hearing, touch, smell and even taste (when I ran blindfolded, I could tell a storm was coming by the taste of the breeze). This new perspective helped me recognize the good in a bad situation, too. 

Running blindfolded gave me the will to survive and energized me to capture and share my sister’s amazing story beyond blog posts, social media and public talks. Not long after the race ended, I knew I wanted to write this book. 

Do you have any recommendations to other writers who think about writing a story that is close to their heart? 

If you feel called to share your personal story, don’t hesitate. Focus on getting the words on paper rather than worrying about where the project is headed or if other people will want to read it. True stories have a life of their own, sometimes even more than fictional ones. Let go of all of your inhibitions, and just write.  

Laura and Taylor at their brother's wedding, 2017

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Now for the drum roll.... here is the cover!

Photo by Rusty Williams.
Rusty took the picture on a side street
in Myers Park off Queens Road West, the site of one of the last scenes in the book.

GIVEAWAY

Run to the Light is coming out November, 2018. I'll be reviewing Laura's book on my blog in the fall. Leave your name and email address and I'll start a giveaway list now. Leave it again when I review the book and your name will be entered twice. 

TED TALK